Neurogenic Bladder and coping

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I'm 29 years old and at the beginning of this year was diagnosed with a neurogenic bladder of very unclear cause. At present I'm being investigated for autoimmune disease and multiple sclerosis.

How do you all cope with having to self-cath in public bathrooms?

What about emotional coping- its a hard diagnosis to accept.

What brands of caths do you use? what cleaning solution? (so far I use mostly Coloplast prducts)

I am still learning along the way.

 

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@Butterfly I use teleflex catheters at home and soap for cleaning. When I'm away from home I use a compact cloroplast catheter and alcohol based hand gel for cleaning my hands. The cloroplast catheter works well because it is already lubricated and the telescopic design means that it fits in a pocket and the used catheter goes back into the same container for disposal. The only downside to the telescopic design is that it is only 12Fr and so it can be slow to empty a full bladder. I have a letter from my doctor explaining why I have the catheters, but I haven't tried airport security yet. I do still leak between catheters because I can't feel how full my bladder is, but I am getting better at timing it so that I can get away with only one set of protective underwear all day. On a bad day I leak so often that there isn't much point using the catheters. With a bit of time I'm sure you will get to know when is the best time to use the catheters to avoid leaks. If you are in complete retention you may not leak at all? Good luck with it, Phil

 

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You are not alone. 5 million people just in USA have neurogenic bladder. There's a great book by JoAnn Lake about living with this condition that may be a great resource. It can be found at https://www.amazon.com/Beyond-Embarrassment-Reclaiming-Neurogenic-Bladder-ebook/dp/B01HN4H5L2

 

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Thanks Adam. Will order it. Review sounds really helpful.

 

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Hi Butterfly I don't use catheters but have fought emotional coping.I have been diapers for yrs.

 

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I hope you can find some good information. Personally I self cath(Coloplast Speedicath) 4-6 times per day. I have neurogenic also, which lead (my urologists words)to urinary retention. I have lots of spasms, so monthly I go in and have a Foley inserted by my nurse, and it seems to relax my bladder for a while.

Bathrooms, I'm assume you are a woman, and it would be hard to do the public thing, but there are woman that do it with the mirrors.

Emotional, well my PCP started me on a antidepressant, to help with acceptance.

I wear incontinence products day and night also